Tuesday, April 29, 2014

Long story short: I won very coveted seats to a special field trip at a school fundraiser. There were 8 seats available; six in an auction (sold in pairs, none went for under $100) and one pair in a raffle (15 tickets for $10). I put a few tickets in the raffle bucket--and I WON!

The prize was two seats on a special field trip with some very popular teachers, headed up by Elena's first and second grade teacher (he looped with the class for one year). Matt knows Elena very well, and knows how to balance her needs and empower her at the same time. The trip was to the National Zoo.

So, eight kids (all E's schoolmates, except Vivian who was allowed to go as one of the 8), several teachers as chaperones, in passenger vans. Jason and I got to stay home, having the day completely to ourselves!

I'll admit I was nervous. I broke the news to Vivian a few days prior (who was very excited about the trip) that parents were not going with them, and she sobbed and said she didn't want to go. We dropped it to see if she'd change her mind, which she did. Elena was not phased by us staying home. That is new.

I spoke to the teachers in advance and on the day of the trip what to expect (very little was news to Matt). I had confidence she would last most of the day, and be able to keep up with a slower group if given some time to rest off her feet. I wasn't sure what would happen at the end of the day, so I suggested a piggyback ride if she wasn't going to make it back to the van on her own. Elena had foot support during the van ride (about 2 hours each way), and to take off her shoes/braces on the way home. Snacks were packed, kids were sunscreened, and off they went!

Girls are ready!

Elena had one important accessory, and two early birthday presents. She wore her "Adventure Vest", and although it runs large (it fits across my chest, but it's for kids) it's a very accessible way for her to carry and collect things while on the go with her crutches. She wore her new sunglasses (sunglass clips for her new prescription glasses; that was one of her gifts) and a digital camera of her own (very few buttons, lightweight). Her camera fit in her pocket (lanyard carabiner clipped to her front vest in case it fell during one handed operation), and her sunglasses case (along with some lunch money) were in the back pocket of her vest (shown below--cinched at the back so it didn't fall off her shoulders).

"Adventure Vest", rear view

Jason and I went on a long walk, went out to lunch with friends, and then relaxed. It was such a fun, free day! The weather was perfect, and we figured if there were any issues we would be notified.

Elena and Vivian arrived back in town close to 7 pm, just a little later than we expected. They were bright eyed and very happy! There were two major surprises from the day. Even though I had given Matt the handicap placard, the closest place to park was about a mile (!) from the zoo entrance. He carried Elena part of the way--something Elena doesn't really want, especially in the beginning of the day when she has energy--but he wanted that energy to be spent at the zoo, not just getting there. I appreciated that. Second, Elena's feet started to hurt near the end of the day. We just got new AFOs, and I should have anticipated some discomfort since she is just getting used them; I probably should have put on her old pair for her to wear. Overall everyone said she kept up well (except for the very end of the day).

She is still (three days past) a little "crouchy"; we see this after a lot of physical activity sometimes. I think the new braces also have a lot to do with the weird stance...my guess is since she weight-bears on the left more, and did so much walking at the zoo, that explains why her "left foot hurts" (even though there isn't any pressure points visible after taking off her AFOs) and she crouches more. We're now alternating her old/new AFOs and watching for pressure problems, while giving her extra massage/stretch and see how long it takes for her to reach her regular stance. My guess is another day or so.

Elena was extraordinarily thankful for the opportunity to go on this trip; the chaperones were excellent, her schoolmates were wonderful company, and she was able to guide and help her little sister on a big girl type of trip. Wins ALL AROUND!

Monday, April 14, 2014

I didn't think things were different than usual. Things were normal. Well, normal for us. But one day Theresa (our PT since E was 8 months old) said that she thought it would be a good idea to talk about Elena's cerebral palsy more often.

I mean, it's not a secret. We know it, she knows it, but...we don't mention it often. Quite frankly, I didn't want to bring it up unnecessarily because I was worried Elena would use her condition as an excuse for things, which is something we just don't do. But Theresa was persistent. She thought it would be beneficial for us to "bring cerebral palsy up as often as possible".

In her view, she thought it would help Elena understand why her body moves the way it does. I thought it would give her a reason not to try as hard. Theresa also said that by making it part of our everyday conversation, as often as possible, as easy as possible, would help Elena open up--to lots of people in her life--about living with CP. Maybe not now, but maybe later, when communication might become more difficult.

Elena and I communicate pretty well right now. But I definitely welcome any advice that might help us understand each other as we get older.

I spoke to Jason about it, and we both immediately got on board. We started talking about it more often. Peppering it into conversation, using it to describe why she is tight, or why breaks on road trips are really important. Or why we want her hands to feel comfortable on her crutches, or why exercise and proper seating are important, or why her testing is different than her classmates.

You know what? It's been great. A really, really great piece of advice. I haven't experienced a lot of Elena instigating conversations about cerebral palsy, but I feel like they will come easier with this new approach. She seems...more at ease, in a way, as if she knows I will be a better listening ear.

If you have cerebral palsy, did your parents/caregiver/therapist do this? What age?

Sunday, April 6, 2014

Since I didn't have to be working seven days a week, and the kids were out of school, Jason took a week off and we decided to take a road trip for Spring Break Vacation. We drove up to see his parents, otherwise known as Nana and Pop Pop, in New Hampshire. We decided to break the trip up in pieces instead of drive all night, like we did when Elena was a baby. We figured that the kids wouldn't sleep, and I worried about how tight Elena would be if she had to sit for long periods of time. We stopped every 2.5 hours (or sooner) and tried to work in exercise along the way.

We started our trip with a slight detour--Jason was speaking at James Madison University. So, we drove to Harrisonburg and dropped him off. The girls and I had a few hours to kill, so we went to Luray Caverns!

The Cavern tour is approximately 1.25 miles of walking--down dark and windy paths (paved), and some impressive hills. There are some steps and in many cases, a guardrail. Still, the terrain was challenging (the hilly parts, mainly) but Elena was never worried about losing her balance and falling. I was, but she proved me wrong. She kept up with the group quite well, and walked the whole tour. There was a chair lift (like the type you get in homes to go up/down stairs) and Elena rode that up and down to tour. It saved her 70+ steps, which was a good idea.

Kids loved it

I have a lot of pictures, but I only showed a few here. Their favorite parts were the Wishing Well (not shown) and the Pipe Organ, an instrument that uses the resonance of the rock formations to play a song!

Awe-inspiring

After Harrisonburg, we made the long trek to New Jersey where we stayed the night in a hotel room. Before we arrived in NJ, we dined at a little restaurant called Rhubarb House in Hagerstown, Maryland. (Jason loves the aggregate review Yelp!. I never thought much of it until this trip--now I LOVE IT. We don't like to stop at chain restaurants if we can help it, so we turned to Yelp! to find well reviewed restaurants/attractions along the way.) It was rainy and nasty outside, and when we arrived the door was locked--they weren't open yet. But they let us in anyway, and we had a fabulous time talking with the owners and had a delicious meal. It was fabulous.

After dinner we headed to our New Jersey hotel. The next morning we saw good friends in Poughkeepsie at Vassar College. Our kids had a great playdate, and breakfast was fantastic! We got back in the car and drove until lunch. We ate at The Starving Artist Cafe in Lee, Massachusetts. A beautiful little creperie, where every crepe can serve two people. There was a great little folk music couple playing and the girls sang and danced, and even got a little lesson with a rhythm clapper.

Live Music

Elena tried the Dancing Man!

Then we arrived in New Hampshire. The weather had just turned nice--the week prior it was all snow, ice, cold and slush. It was warm(ish) and the snow was melting. The kids couldn't wait to see their grandparents. We had an easy dinner, and relaxed for the night.

The next day we headed off to a mall to get some exercise--mostly to ensure that Elena didn't get too stiff. It was still cold and rainy, so we headed off to a mall and did a lot of walking.

Orange Julius after exercising

We stopped at the neighborhood where Jason grew up, and visited his friends' parents who still live on the street. They even had a playroom with toys that the girls could enjoy!

We had dinner with some of Jason's friends in town. They have a daughter one year older than Elena, and we had a great meal with great company.

The next morning we headed to Jason's alma mater, the University of New Hampshire. We talked to some of Jason's business friends while walking around the campus, at least 2 miles. The weather was beautiful and Elena kept up beautifully.

UNH Wildcats!

We took a small detour after UNH to the Hampton Beach. We kept the destination a surprise--when Vivian saw the ocean, she was so excited she wanted to go in the water. She whined she didn't have a bathing suit, so I told her if she wanted to go in, that was fine, but she couldn't wear her clothes in the water. She stripped off her shoes, socks, and pants right there (while another family was playing in the sand with their winter coats on, mind you) and ran to the surf.

Vivian insists the water isn't too cold

Vivian still insists she is not cold (SHE IS!)

After getting reclothed, we went down the beach a ways and found a cute playground. Lots of stares with Elena's crutches. No big deal, though. Then back to Nana and Pop Pop's house for the evening.

Beach Playground

The next day we drove into Boston, to the Science Museum. We took the subway ("The T") into the city, which the girls loved. We had to walk about a half mile from the T to the museum. E looked great.

Fog Tornado!

Plasma Tube!

The big highlight was the Lightning Show. There was a HUGE Van De Graaff generator as well as some impressive Tesla Coils. We all enjoyed the loud and sparkly show!

Lightning Show was awesome!

Vivian's favorite exhibit was the one about space. She thought the Gemini Capsule was her own personal refuge.

Gemini Bunk

Vivian LOVED her "spaceship"

We all walked about 5 miles to/around/from Boston. Elena looked a little wobbly near the end, but overall she looked fantastic. When we did stretches that night, she was looser than ever. She was not sore the next day when we went to the Maple Barn (the end of syrup season) for breakfast.

Parker's Maple Barn

Sugar House--where they make syrup!

We had a great meal, and since we had to leave before tour time, they gave us a private little tour of the Sugar Shack and how syrup is made.

That was our last stop in New Hampshire. We broke up the trip on the way home with a stop at a unique resort in Connecticut. It was a pretty fancy place. The girls were on their best behavior and had wonderful manners at dinner. The staff were on a first-name basis with the kids before we left!

Beautiful girl on a beautiful day at a beautiful place

Girls loved the Game Room

Our room for the night. It was super cool!

We left later than we had expected that day...we were hoping to make one more stop in Hoboken but had to bag it b/c the drive home was going to be a long, rainy slog. We took breaks every 2 hours or so for potty breaks or just to get up and stretch/walk. We made it to my parent's house (Grandma and Grandpa's) around 7 pm for a late dinner. We ended up staying the night with Uncle Andy and Aunt Melissa, which was fantastic b/c I was too tired and the kids were too cranky to make the short 2 hour drive home.

We finally made it home mid afternoon Saturday. Our home sweet home. Our cats were happy to see us (big thanks to the neighbors who helped take care of things while we were gone!) and we are getting back into the swing of things.

I admit, I was very very nervous about the idea of a long road trip--Elena tends to get super tight from prolonged sitting, so much that her movement is impaired for the next two days or so. Or, she has problems with dehydration during the trip and gets constipated. This time? NOTHING. She moved beautifully, never felt sick, slept well, met a lot of new people, and had fun. Vivian had to be carried a few times b/c she was out of gas--but Elena did not. This opens up a whole new possibilities for adventures for our family. It was a wonderfully different sort of Spring Break. Now we have to figure out where our next road trip will be!

Big thanks to The B family, Luray Caverns staff, Rhubarb House, The Cliftons, The Starving Artist Cafe, Aaron at UNH, Kevin and Pat, The Trembleys, The Winvian, Nana and Pop Pop, Grandma and Grandpa, and Andy and Melissa for making our trip such a positive experience!

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.